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Permalink Reply by michelle on March 17, 2014 at 11:09pm

Hi there,

I can appreciate your frustration!  Its bitter sweet when blood work comes back normal.  Of course you want to be healthy but it leaves more questions.  Alopecia (if this is what you have been diagnosed with) is an autoimmune disorder.  Your immune system is attacking your hair follicles thinking its a foreign substance. There are different degrees of this illness....anywhere from losing patches of hair to full scalp loss (alopecia totalis) and total body hair (Alopecia Universalis) This will not show up in blood work. This disease is very unpredictable. Hair loss could return on its own..or not.  There are a number of treatments that could help depending on the severity of the disease.  On the plus side there are no health related concerns.  The challenge is the emotional impact of losing a physical characteristic. This is not to be taken lightly.

My suggestion is to get a referral to a dermatologist for a clear diagnoses and treatment options.  In addition, stick with this site.  There are many individuals that can offer a ton of support.   FYI, I have AU.

take care,

Michelle

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Permalink Reply by MJ Wrick on March 20, 2014 at 1:40pm

it's not really a day-to-day kind of thing, really. One thing I learned from my immunologist and my lawyer (who has another autoimmune condition) is that stress can swing either way good or bad. One of the tough issues is finding an immunologist tthat is knowledgeable about alopecia. The same with a lot of dermatologists (I had two clients that were dermatologists and I knew as much about it as they did). Myinsurance is great but wont cover a scalp  prosthesis (wig) as a DME, or a serious hair loss specialist- they can pretty much name their own price, from what I've seen. I cannot fathom over a grand for a serious wig, so I've always worn synthetic, either with a mono-top or lace front. I cut my own bangs and trimmed my hair for years, and I learned to be handy with thinning shears in a pinch (I have a beautician who does the big stuff if I cant sort it out).Ive learned the colors that work for me (gotta have roots if it's not as dark as my hair), and know where the good deals are.

About the falling out- around the same time I discovered my boss was prettymuch a crook and was preparing to quit (I struggled, because i loved my job and my clients), I got the real flu H1N2, making it easy to quit- I was seriously ill for 6 weeks, then ended up with a respiratory infection that I'm still recovering from. This all started in December, so when I started falling out, I was not surprised. three & a half years ago, I had a horse I was winning everything with; the succes was really overwhelming. About 9 weeks later, after things started to settle down... bam! Out it comes. My first fallout was at 20, during a bad relationship. I have had it as areata, where it comes out in patches (my adult son has this), and as androgenetic, where in massively thins all over til you're almost bald. I have in the past also lost some brows and lashes.

One of the first things i notice is the texture of my hair gets a little funky, I really don't notice much with my scalp. I cut it shorter then, and use a filler like toppik.  I shave my head when it gets too thin to stand on it's own. I never clip shorter than 1/4 inch to avoid ingrown hairs. Sometimes my scalp is a little itchy at first, so I moisturize with oil at night and use a little hydrocortisone spray before I wear my wigs. I am very thankful for this, believe it or not- there are definitely autoimmune conditions I would NEVER want to be saddled with. I try to eat clean and keep up with my water, so I know Im doing my best to stay healthy.

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Permalink Reply by MJ Wrick on March 20, 2014 at 10:06am

I'm getting the impression this is pretty common- mine was normal, but diagnosis after scalp exam was indeed, alopecia.

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Permalink Reply by Hayley on March 24, 2014 at 3:11am

There isn't really a 'why' or rather there isn't always a 'why'. Some people lose their hair because they are stressed or sick or deficient in some nutrients but for many of us there is no reason at all. Alopecia is a young persons disease, many first get it as children but that's not always the case. I started losing my hair just before turning 26, like you I'm young and healthy and drove myself crazy trying to figure out what was happening. After a million tests I came yo the very simple conclusion that there was no reason for it.
Michelle already explained what's going on in your body so I won't reiterate the same information. The best thing you can do is figure out what to do now. How can you adapt to this new challenge? Create a support system both of friends and family as well in the alopecia community, it will make things...bearable.
Most importantly remember two things: you are not alone. It is not the end of the world.

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Permalink Reply by michelle on March 24, 2014 at 5:35pm

Alopecia is not a young person's disease.  It can hit at any stage.  For me AU at the age of 49.  Alopecia is autoimmune.  Its not as simple as 'its caused by stress'.....and it isn't!  Then the argument should be that reducing stress will bring back my hair.   What is known about Alopecia is that the actual cause of Alopecia is unknown.  This is similar to other autoimmune diseases ...i.e., Type 1 Diabetes, Crohnes, Celiac, etc.  So once your doctor has ruled out other causes for hair loss and you have been given the diagnoses of Alopecia, I would strongly recommend to not looking for the why.  It is an unpredictable disease, that we do know.  Depending on the severity some treatments work.  So, what to do next as Hayley has shared.  Give yourself permission to grieve the loss of your hair....it is crappy and you get to say so.  You will hear....at least your not sick or you do not have cancer...   The reality is the psychological impact is pretty tough.  I had long wavy beautiful dark hair.  I miss it every day.  I decided to live today.  I wear hats and scarves or go natural (bald).  I don't like wearing wigs.  Do I get stares..of course I do.  Not many women are seen with a bald head.  I walk with confidence.  I also allow myself sad moments...which I have every now and then.  With AU I have NO hair on my body so its been an adjustment.  Keep using this site and find a support group in your  area.  You will get through this!

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